Words cannot begin to express how deeply grateful I am that I found the Trisomy18 Foundation. When I was 6 months pregnant we discovered that my identical twin girls both had trisomy 18. One twin had obvious physical abnormalities that would be incompatible with life if no surgical intervention was done (which no MD would do once the T18 diagnosis was given), and the other showed no physical problems in utero, which led us to want to continue the pregnancy and give our girls every possible chance at survival. The foundation, first and foremost, allowed me to connect with other families who had been through similar experiences, which was huge for me because I felt so alone with this diagnosis- I had never heard of Trisomy 18 before and neither did any of my friends or family members. This proved even more important for me after we lost our twins after birth because what helped me most with the grieving process, even now- 7 years later, was connecting with other parents who had been through this too. Even now I have awesome lifelong friendships with moms who have gone through my similar experience. We contact each other when we need support, and we've been able to share our lives and experiences with each other as we deal with life going on after the death of our children. And I cannot say enough about the foundations president, Victoria Miller. The care and compassion she gave is in our darkest and scariest times made such a world of difference. She even called me personally and gave me tips and advice on how to advocate for my baby girls when they were born. She was absolutely amazing! Although my girls didn't live long in this earth after they were born, the Trisomy 18 Foundation has been a life saver for me and I am thankful every day that myself and countless other families out there continue to have it as a resource.
The Trisomy 18 Foundation provides a lifeline for parents faced with a new diagnosis of Trisomy 18. The executive director is knowledgeable, compassionate and unendingly dedicated to this important work.
As a colleague in the field of prenatal testing and genetic conditions, I have had the true honor to interact with the Trisomy 18 Foundation on a regular basis. They serve a wide array of stakeholders, including patients, families, key opinion leaders, academics, industry and policy makers. The T18 Foundation leadership is organized, thoughtful and comprehensive in providing services and tools that help mothers and families coping with the pre-diagnosis, diagnosis and decision-making post-diagnosis of Trisomy 18 and Edwards syndrome. I truly consider them to be a GREAT Non-profit, and I hope you will, too, after learning more about their offerings.